Corresponding author:
Hilary A. Power, M. A.
E-mail:
hilaryp045@gmail.com
Tel: 1-709-427-8530
Postal address: University of Regina, Department of Psychology, 3737
Wascana Parkway, Regina, SK, Canada, S4S 0A2
Keywords: cystic fibrosis, children, mental health, qualitative
methods, coping, treatment
Running head: MENTAL HEALTH SERVICE NEEDS OF CHILDREN WITH CF
Abstract
Objective: Children with CF may experience elevated symptoms of
depression and anxiety, as well as impairments in quality of life. To
date, there is no mental health program specifically designed to address
the mental health needs of children with CF. In the interest of
informing the development of an accessible (i.e., Internet-delivered)
mental health program, the present study examined the information and
service needs of children with CF from the perspective of children with
CF, their parents, and CF health care providers.
Methods: A qualitative research design was used. Participants
(n = 16) included children with CF (n = 5,Mage = 9.25, SD = 1.29), parents (n= 7, Mage = 36.43, SD = 3.46), and health
care providers (n = 4, Mage = 44.00,SD = 10.46) recruited from regional CF clinics. Participants
completed a brief demographic questionnaire. Semi-structured individual
interviews were conducted with all participants.
Results: Thematic content analysis generated four major themes:
(1) challenges living with CF, (2) coping, (3) building independence,
and (4) bridging gaps in services. Each theme was comprised of several
subthemes.
Conclusions: The findings highlight many emotional and social
challenges experienced by children with CF and their families. Providing
effective support for the entire family in managing and coping with CF
was emphasized. Information gathered in the present study will be used,
in combination with the empirical literature, to inform the development
of an Internet-delivered mental health prevention program for children
living with CF.
Keywords: cystic fibrosis, children, mental health, qualitative
methods, coping, treatment